SMALL FIBRE NEUROPATHY pain=frustration!
 

Hi everyone, I'm so fustrated with constantaly being in pain and not being able to do anything! I've had cronic lower back pain for 5yrs but since haveing my 2nd child in oct 2009 I have been suffering (I've been told) with small fibre neuropathy, sicatica (which nerosurgery are going to do nothing about) and cronic headaches/migraines. The cause of the small fibre neuropathy hasn't been found yet but they are testing my B12 level as it could be due to not absorbing B12 and could be spinal cord diffenency due to B12 and sending me for a brain scan because if they find white specs on brain then they will do a lumber puncture to test for MS. The frustrating part of all this is I won't be seeing the neurologist until nov! Nobody cares about me being in pain! Every time I have a cronic migrain I throw up so I can't take my pain killers so I end up having to call an abulance (because the out of hours doc won't give out morphine) having morphine and spending hours in A&E. My pain killers are not working anymore and it could be months before I get to see anyone at the pain clinic and every time I get frustrated and upset with them I'm depressed and need diazapan or vallium:)! I just need someone to talk to who understands and somewhere where I can get out all the questions in my head!
Thank you for allowing me to have a moan! Xxx

While I won't say "I totally understand" (tangent: I HATE when people say that--we are two different people in two different circumstances... you don't know what I go through and I don't know what you go through)... I do know the frustration of pain.
I also have chronic back pain (since I was 8--I am now 24, so 16 years). I also get migraines, and have large and small fiber neuropathy. It is very difficult.
I'm sorry you are having such trouble. Is there any way you can travel a little farther and get in sooner in another town? You may want to check into that--it would be worth it. That's the only suggestion I have for you in regards to that, but it may be an option. November is a long time from now--and if you can get in sooner, you may be able to get relief sooner.
I have been on all kinds of medicines, and they don't work for me. My pain is much too strong, and I do not respond to any medicine.
Large fiber neuropathy also includes motor and balance issues--so be thankful that you don't have that part of it. I have real issues with falling down and whatnot.... so there is one positive for you! :)
If you ever want to talk, feel free to message me. Like I said, I don't know exactly what you are going through, because we are two very different people... but I am in a lot of extreme, chronic pain as well... the only thing I am very thankful for is that I have been able to remain hopeful and I have not struggled with depression. I have a large support system of family and friends and have a strong faith in God. I also have a CaringBridge journal that I write in almost daily that helps me greatly. Depression goes hand in hand with chronic pain and illness--and I'm thankful that I do not deal with that (though, I have in the past, for many years--I just don't currently).

Unfortantaly I do have the balence problem and I'm currently in a wheelchair! Lol I don't actually have depression its just when I complain or feel frustrated and express it the doctors and A&E staff say I'm "depressed" and they "understand" what I'm going through! Rediculous! Thank you for the offer of talking to you its nice have someone who kinda understands and can sympathise with me.

I know in Britain it's difficult--
 

--to get prompt diagnostics the way the National Health Service works, but it does seem that there's been little pattern or plan to your diagnostic journey from the doctors there (at least yet).

Neurological symptoms that come from many different places/causes can feel exactly the same--a problem in your spine can show up in the extremities, but those sensations can also possibly be from problems with peripheral nerves and not the spine--and that's why most neurological diagnoses are long processes of elimination.

I think the Liza Jane spreadsheets might help--these are lists of tests for neural symptoms, organized and set up to track results over time:

www.lizajane.org


Get any results from tests you've had so far, and then arrange them and track them--the charts area also good for suggesting testing avenues to doctors that they might not think of themselves.

Thank you! there hasn't really been a patten as i was under neurosugery then they told me that there was nothing they could do for me then i was refered me to a neurologist (who i've only just had my fist appointment with) who has sent me for a blood test to see if my body is obsorbing B12 or not and testing for MS :(
I think that it might be as there is so many simular symptoms from what i'm going through to MS but until i have a diagnosis there is nothing i can do!:Sigh:

Hi,

Have English relatives and can just imagine what a tough time you're having with:

1) getting to see the right kind of docs;
2) getting all of the tests you ought to be having.

Please don't give up. From what my sister-in-law tells me, she has to just keep pushing in a nice way until she gets the appointment a sooner rather than later for my brother-in-law who's very sick with Parkinson's and orthopedic problems.

First of all, seems that you need a whole bunch of tests - lots of bloodwork to rule in or out lots of things, probably lumbar puncture (spinal tap) and other testing that the neuro can order. If you've already been told that you have small fiber neuropathy, does that mean you were diagnosed via skin punch biopsy or not. If not, that is pretty much the most reliable way to test for SFN.

As to your sciatica, I have had occasional bouts of it. My orthopedic doc gives me a cortisone injection, and it's gone. Until, of course, the next time which can be years later.

Wish I knew of something to suggest for the pain. Have you read the sticky post here about B12 and why it's so important to be tested for deficiency - using the RIGHT test, of course, and then MrsD here at this website has put up information about Vitamin B1 being possibly effective against neuropathy.

Good luck and best wishes.

P.S. (Will be visiting your lovely country in October and staying near Brighton.)